For those of you new to my blog, Far Guy has Trigeminal Neuralgia Type II..atypical facial pain. He was diagnosed on Christmas Day 2007. From time to time I do updates on "Our Situation" .. our struggles..our sucesses (not many) and our failures. Presently he takes Tegretol and Neurontin to try to control the pain. The support group that we formed back in October has gone by the wayside..however we still keep in contact with some of the people in our area that also are afflicted with this horrible disorder.
Somedays even though Far Guy is better..he is worse. He does not want to talk to the Nurse Practitioner on the phone anymore. (Y'all know how I feel about talking on the phone.) He is totally capabable of talking to his own Nurse. A dedicated one at that, she called this morning..on a Sunday, her day off..because she cares and had not been able to return Far Guys call on Friday. They discussed his medications, she is just as confused as we are..why somedays are better and some days are not. Far Guy will work up a pain graph for his Nurse, once she has a look at it..she will increase his Neurontin. That is good news..I was afraid she might want to increase the Tegretol again..
Somedays I get SO frustrated with prescriptions.. numbers of pills needed..prescriptions changing. Being in the middle sucks. Far Guy is off in La La land with his prescriptions.. He told me "I have enough of that prescription to last at least another month." I started counting the pills.. eight days is not a month...at least the last time I was totally sane..a month was thirty days. We need a new prescription. Far Guy says "OK, guess I need a new one"..
I wrote a letter concerning medications and refills to his Primary Care Physician that is local.. I have found that Doctors may or may not return your phone calls..but they usually respond to letters. It is a paper trail, I think that leaving one scares the bejesus out of most Doctors. Anyway, I wrote it all out for Far Guy..told him to type it up or send it just the way it was..longhand and signed by me..
I have learned that Trigeminal Neuralgia is an extremely frustrating rare disorder. I believe we are on a better track after our visit to the U of MN..but Far Guy is getting a little/lot stubborn on me. I want him to be pain free, but he is willing to cope with the pain as long as it is not excruciating. We differ in our opinions, we discuss it..he is supposed to keep a pain diary..I sometimes fill in for him..It is a medication/pain log that sits near the bottles of pills in the kitchen. He has stopped keeping track, he is digging his heels in..If I ask him what his pain level is..he ignores me..or gives me a number that makes no sense what so ever..a million, five hundred thousand and thirteen.. all that tells me is that he does not want to share. The pain level is only 1 through 10.. I can usually tell what it is..if he is on the couch it is a seven, if he is in the bedroom it is above a seven. If he talks funny, biting down on his cheek while speaking..it is a five..if he is really cranky and pacing or just holding his head in his hands it is a ten. God, I hate tens. There is no rhyme or reason to the pain fluctuations, one day can be miserable as all get out of Far Guys way, the next the pain is tolerable. If only I could find a clue to the answer of why the pain fluctuates..the weather..the wind..chewing..it is like looking for a needle in a haystack.
Far Guy has a theory..shit happens..AND he thinks that the nerve only has enough energy to transmit the faulty signals for so long (the most painful times) then it burns itself out..and he can have a day or two with less pain while the nerve builds up the ability to transmit the faulty pain signals again.
He is much better than he was, he is not in a fog, but he is more moody..and cranky..uffda..somedays. The real pits is that everything revolves around pain, most things that we do are on the spur of the moment..if Far Guy feels good and is having a good day..we can get out and about. Bad days we just stay home..pain sometimes hold us hostage. Somedays he is a real trooper and says "I can feel just as rotten anywhere we go."
Somdays I wonder, why a good, kind person like Far Guy has to suffer so much. Somedays I wonder what I can do next. Somedays I would just like to give up, just like the Medical profession and research has..but I can't..cause Far Guy has it everyday...
Chance is very intune to Far Guys pain, he leads him to the couch, he comforts him by licking his hands. He does what he can in his own way to make things better. We TRY to laugh everyday, instead of cry, we try to make the best out of every day, somedays I just need to unload:)
I sympathize with you, dear Connie! Pain is a terrible and ruthless taskmaster. So glad that you try to grasp the day and the good moments...
I certainly am sorry for what you two are going through. Believe me, I am truly sorry. Nalley has been sick for nine years (something neurological - he can't drive, can't work) and we have been everywhere - even Emory Univ. Hospital gave up on us. Like Far Guy, Nalley loses count of pills remaining, doesn't tell the dr. everything and we are basically hostage to the pain and inability for him to walk without falling and travel is nearly impossble due to the discomfort. Testing continues but it is usually inconclusive. I know how you feel caught in the middle. I am usually the "bad" guy for telling all the symptoms. If it helps at all to yell and get it off your chest, feel free to email me. (it's on my blog profile) Hoping tomorrow is a better day for you Connie. You don't have to post this comment if you don't want to.
Connie -- I am so sorry that your family has to struggle in such pain. You are in our thoughts and prayers.
Sorry to read about your problems, thinking of you :-)
So sorry for the pain he is going through. I do believe the pain is fluctuated by the weather. I have fibromyalgia and the pain is worse according to the weather. So just keep a record of that with the increase of his pain to see if the run together. At least this may give you a reason it may not help but its a reason.
I wish the best for the two of you he is in pain but so are you.
It's hard to watch those you love suffer, especially when there is nothing you can do. I feel for you both.
Ahhh, Connie. I'll be praying for y'all.
Dear Connie, I'm so sorry for what you and family are going through..thoughts are with you.
It's so hard to watch and not be able to help..
Constant pain wears you down..
take care of yourself too.
Hugs Julia ♥
Hi Connie...I had no idea your Far Guy was suffering with this disease.:( It is so hard to be in pain every day and act like you are excited to do life. I've been in pain and continue some days to be that way but nothing like what he is experiencing. I had never heard of this before but did a little googling to check it out. The Mayo clinic keeps coming up. I am sure you have researched this thing to death if you are the kind of person I think you are? What a great love you have for him...he's lucky to have you in his life and I am sure you feel that way about him. When my hubby is sick or in pain he gets very quiet. Most of my female friends complain about their hubbies when sick....that they whine..whine...whine...mine doesn't at all. I have to check on him to make sure he is still alive! I feel so bad for him as you do yours. What about massage? Are there any alternatives to the pain meds? Do certain things trigger it like salt or alcohol or? I am sure you know all of the answers to these things. I am so sorry you both have to go through this. I know this is no consulation but when things are really bad for me...pain wise...I picture someone whom I know, that has it much worse than me and then I begin to feel gratitude. I know it sounds weird but I have to go to a place like that! Good luck to you both...you're added to my prayers.:)
Dear Connie~ Such a loving and tender heart you have...The two of you together make each other Shine!
I have only known one other person with this terible malady....and there does not seem to be answers even after many years of research.
I do believe the MAYO CLINIC has vast research in this area.
Far Guy must smile at his two honeys:
Wife and Partner for life ♥♥Connie♥♥
...and precious sidekick ♥♥Chance♥♥
I can imagine the difficult pain Far Guy endures.....
.....thankfully you are able to unload here, because I know it has to give you some needed relief.
We're here and we have broad shoulders.......so let it rip.
Hugs: Liz in PA
I used to work for a neuosurgeon who treated Trigeminal Nueuralgia. I know it's very painful. I hope he gets relief and know that as Liz said, we are here to listen when you need to vent.
Thank you for all your kind comments. Thanks for listening..I just needed to unload. We have researched this disorder for so long..nothing new is happening..no new drugs are available..pain medications do not work for TN patients. The medications he takes are both anti seizure medications. One helps to keep the Lightening bolts away pain level (+10) the other is for the dull ache that is constant..except at night or when he is laying down. Lucky for us, he can sleep as the pain is less at night.
The Nurse practitioner we are working with, is the intake worker for the Head of The Dept of Neurosurgery at the U of MN.. we are comfortable with them for the moment. He has many more success stories than Mayo.. I am a little skeptical of Mayo..when you are in the trenches so to speak..it is time to go with a winning team..not a mediocre one.
Again thank you for your kindness and concern:)
I wish there were something I could say to make it all better. We are still praying for you and Far Guy.
I hear your voice ...it's good to vent. Illness is stressful on the loving caretaker! I have a long prayer list and room for more :) Blessings!
I'm new here and I just wanted to say I'll be keeping you both in my prayers. I also wanted to say thank you - I am in the midst of writing a whiny post about how I am not feeling so happy these days - and then I read your post. I really need to understand how good I have it.
So sorry to hear of your difficulties-you seem to be handling them with grace, and unloading is very helpful (as is a kind and loving dog).
I'm so sorry to hear about what far guy is going through. I'll send along positive thoughts and prayers - give him a big hug from me too!
How awful Connie! I'm so sorry Far Guy and you are having to deal with this. It's so difficult dealing with a chronic illness, especially one so mysterious and hard to treat. You're both in my thoughts, and I sincerely hope an effective treatment can be found.
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